It seems like there is a lot of misunderstanding about treatment plans and the roles the diagnosed person (DX’d), family and doctors play in ensuring treatment and effects are communicated, managed and followed up on.
I’m going to throw out my opinions here a lot, so forgive me if some details seem very particular.
First of all, I think a lot of patients and families treat the Psychiatrist as a primary care doctor. Keeping them on call and setting frequent appointments, even when the psychiatrist seems to believe fewer appointments might be equally helpful from their perspective.
I have seen my DX’d brother struggle to get prescriptions refilled due to a delay in being able to meet with his Psychiatrist pretty often. This could easily be resolved by meeting with a primary care physician (PDOC), who is a general practitioner, but more readily available and also directly involved in the treatment plan.
Going without a pdoc means that when the psychiatrist is otherwise occupied (they have -a lot- of patients!) and he needs a medication refill in a hurry, my brother has to resort to waiting in a minute clinic (also known as urgent care), where he spends a lot of extra time describing his circumstances in addition to long waits to be seen. All of that could be a simple phone call to a friendly neighborhood pdoc.
Therapy seems to be vital. I’d recommend a combination of group and one-on-one therapy. Everyone is a little different and some people have a hard time opening up, especially about something so profound as Sz/SzA. Group has helped my brother to feel like his problems are not too taboo to speak about, individual therapy has helped him gain targeted, structured discussion about his struggles. Often times, he comes away from sessions with a renewed sense of being capable of managing his symptoms better and a set of goals to work toward. Also, he sees how other people with similar struggles interact and talk about it. There are both good and bad examples, which reinforces his determination to press on with treatment and retain as much of his independence as possible. It’s inspiring to hear him talk about his therapy. Not only because it helps him so much, but because it reminds me that it is always worth trying for self-improvement. We all deserve to give ourselves a chance at ‘better’.
Going without therapy, it’s obvious with hindsight that my brother had a hard time knowing how to talk about his disorder and the symptoms, along with all of the emotions and struggles that seem to naturally come with it.
Administered medication is better than a person who is struggling almost constantly attempting to manage their own medication. It seems that deciding to take medication is one thing for DX’d people, but deciding to ensure that it is taken exactly as prescribed at the exact right time is another issue entirely. My brother as proof that it is extremely difficult to keep track of many different medications simultaneously. It seems like having a teammate that helps count and organize medication helps, but ideally, someone else would help administer all meds. A single difficult day which leads to distraction and a single mismanaged dose can potentially lead to weeks of hardship. Most medications for Sz/SzA take a month or more to reach an effective level within the DX’d and a fluctuation in that level can cause harsh side effects, withdrawal symptoms and trigger symptoms of the disorder… Even all at the same time. If I could have my way (which I can’t), my DX’d brother would have a registered nurse visit twice a day to help administer the more powerful medications. It might not be so important for meds like nausea, which simply manage side effects, but it seems necessary to me to make sure the more powerful meds are tracked and taken precisely.
Going without has caused a lot of unnecessary hardship for my brother and it’s possible that some of his visits to the emergency room for psychological distress could have been avoided entirely.
Family involvement seems just as important as the rest of the things I’ve written about. Not everyone has to be unified in their opinions about how best to help in every scenario, BUT: each family member should adopt the stance that support, encouragement and consistent, even tempered conversation comes before all else. In general, we all want our DX’d loved ones to be able to take care of themselves and have good opportunities to pursue in life, work and love. We want them to be able to feel contentment and satisfaction in their daily lives. When it comes to specific points on which we disagree, it’s more important to make open discussion about Sz/SzA and treatment a positive experience than it is to get our point across. The common ground is the good intentions and the support for our DX’d loved one, build on that!
Alienating family because there is a disagreement about treatment options is a tough situation to be in. Especially when both parties genuinely want to help the DX’d. Rather than sticking to our guns and squaring off about treatment options, we can instead tag along with our DX’d to appointments with doctors and attend family member therapy (either in person, remotely, or on a forum). Asking open-ended questions to doctors involved directly with your loved one’s treatment can help, as long as they are not simply intended to reinforce one’s own opinion;
“Do you really think medication is necessary?”
“Would commitment in a residential treatment facility be a good option for my DX’d loved one?”
Especially when asked of the doctor who is directly involved in making those types of decisions, questions like that give the doctor an opportunity to shed light on why they have recommended certain treatment options specifically for your loved one. They may also help point out facts or circumstances which might not have been obvious to us.
Refusing to find a way to align together to help support our DX’d loved one, or independently pushing our personal opinions on each other breeds conflict. It can be just as detrimental to have a group of people who refuse to address the diagnosis as it is to have multiple people attempt to ‘lead the charge’ without adequate knowledge and guidance from an expert like a psychiatrist. I’ve seen the kind of conflict that it creates and the bottom line is that it doesn’t help the DX’d at all, worse it can fragment an otherwise effective support system.
Everything I’ve written in this post is from my own personal experience and can be taken as a matter of opinion. I’m definitely not a doctor and have near-zero medical knowledge. My opinions are my own and have absolutely no bearing, implied or otherwise, on your actions. Always bring questions directly to your doctor and follow their recommendations.